Palliative Care: What is it? How do I get it?

Posted by Merry, Volunteer Mentor @merpreb, Sep 3, 2019

I know that I have been confused as to what palliative care means until my oncologist recently used it in reference to me me! I said, "Whoa, hold your horses am I dying or near the end, I have plans?" All of my life I have known it to be in reference to dying patients, keeping them comfortable and pain free. Boy was I wrong!
"The goal of palliative care is to help people with serious illnesses feel better. It prevents or treats symptoms and side effects of disease and treatment. Palliative care also treats emotional, social, practical, and spiritual problems that illnesses can bring up. When the person feels better in these areas, they have an improved quality of life.
Palliative care can be given at the same time as treatments meant to cure or treat the disease. Palliative care may be given when the illness is diagnosed, throughout treatment, during follow-up, and at the end of life.
https://medlineplus.gov/ency/patientinstructions/000536.htm
I am blessed to have such an excellent oncologist. Dr. Jennifer Temel is an expert in palliative care and uses it with her patients along with other doctors caring for that patient. Palliative care needs to begin at diagnosis and follow you through your illness- from hang nail to manicure. (http://www.dfhcc.harvard.edu/insider/member-detail/member/jennifer-s-temel-md/)

So with out further blathering please read what she has to say because she says it perfectly.
https://www.ascopost.com/archive/meetings/2015-palliative-care-in-oncology-symposium/jennifer-s-temel-mds-expert-perspective-palliative-care-in-2015/
(By the way, it's true- the camera does add 10 lbs on!)
My palliative care has been excellent since the very beginning. After surgery I have had every pain and discomfort tended to, medicines or suggestions given to me, explanations made as clear as they could on the day that I asked. I think of palliative care as having a new "mommy."

This is the video that Dr. Temel refers to at the end of her talk. https://www.ascopost.com/archive/meetings/2015-palliative-care-in-oncology-symposium/vicki-jackson-md-mph-on-effective-care-integration-and-the-comanagement-model/

What have your Palliative care experiences been like?

Interested in more discussions like this? Go to the Cancer: Managing Symptoms Support Group.

@cindylb

My husband was offered palliative care when he was diagnosed and that was a year ago. Unfortunately the team that does this for our insurance/doctors were very weak in explaining what that really was or what they could do. Just last week I finally got an answer and some support. The addition of palliative care is very important and helpful but the quality of the team providing it makes all the difference. I'm grateful to finally have found a social worker within the team who 'gets it' and is helping us get more support.

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When talking to medical professionals about your/his care, especially with palliative care, it helps to say how the care will help maintain independence. The patient is an important part of the decision making team, and their voice should he heard. The insurance company is always motivated by what will cost it the least. And staying independent means less costs for them.
What types of care might help with independence? It depends on the diagnosis, for instance, if a patient has had throat/mouth issues and is at risk for losing the ability to swallow, then ongoing speech therapy services may extend the time that swallowing is functional. Even though the goal is not to fix the problem - but therapy could help make eating independently last much longer.
Same goes for pain. If some type of exercise or PT alleviates some of the pain then the patient may be able to move more and stay healthier- less co-morbid health issues, better self-care.
Other care that may reduce health decline and maintain independence: muscle strength, balance, reducing pain to stay active, engaging in social events, maintaining skills needed for a hobby or to cook for oneself. Think like the insurance company - how will the patient’s functioning affect costs over time. Keeping you healthy and independent is much cheaper for them than long term high cost care.

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@cathy56

The problem is with most local Oncologist not referring to Mayo they prefer not to offer pain and other symptom relief! Even if you are diagnosed with metastatic cancer or you are referred to a radiation oncologist for chemo or radiation, go off hospice and can’t get back on hospice til a correct PET scan done !
Lost my trust with medical professionals

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Hi Cathy - Can you explain a little more about what you are talking about? Palliative care is different than hospice, and can be accessed before hospice, or during a hiatus such as you are describing.
Here is a pretty good definition, "Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to improve quality of life for both the patient and the family.

Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment."
Are you looking for a return to hospice, or would palliative care suit you at this point?
Sue

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The problem is with most local Oncologist not referring to Mayo they prefer not to offer pain and other symptom relief! Even if you are diagnosed with metastatic cancer or you are referred to a radiation oncologist for chemo or radiation, go off hospice and can’t get back on hospice til a correct PET scan done !
Lost my trust with medical professionals

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@carsoncreek

I was recently diagnosed with Pulmonary Sarcoidosis. And, I also have a twisted aorta that is somewhat calcified. I have 100% confidence in Mayo, MN, and love everyone there. Next week, I see a Pulmonary Physician and Cardiovascular Doctor. Along, with more testing. I may be interested in Palliative Care at some point. I am curious about whether I can get it down here in Southeast Iowa. How can I find out more about it?

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In addition to @sueinmn’s recommendation to look for local palliative services, you may also wish to talk to your Mayo pulmonologist and/or cardiologist about palliative care options at Mayo Clinic.

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@carsoncreek

I was recently diagnosed with Pulmonary Sarcoidosis. And, I also have a twisted aorta that is somewhat calcified. I have 100% confidence in Mayo, MN, and love everyone there. Next week, I see a Pulmonary Physician and Cardiovascular Doctor. Along, with more testing. I may be interested in Palliative Care at some point. I am curious about whether I can get it down here in Southeast Iowa. How can I find out more about it?

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There are some palliative care resources in southern Iowa, but it will depend upon where you live. I don't usually advise Dr. Google, but in this case, you might try this search:
Palliative Care near me [your zip code or nearest medium sized town or city]

Sue

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I was recently diagnosed with Pulmonary Sarcoidosis. And, I also have a twisted aorta that is somewhat calcified. I have 100% confidence in Mayo, MN, and love everyone there. Next week, I see a Pulmonary Physician and Cardiovascular Doctor. Along, with more testing. I may be interested in Palliative Care at some point. I am curious about whether I can get it down here in Southeast Iowa. How can I find out more about it?

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@alive

Thank you for sharing your experiences with palliative care! I was diagnosed with acute myeloid leukemia 6,5 years ago. I had a lot of chemo, stem cell transplant and was in and out of the hospital for a very long time. I wish I knew about palliative care at that time - I would have really benefited from it.

We had a social worker on our floor when I had my transplant, but I felt like I could have used a lot more support at that time. My hematologist oncologists were totally focusing on “fixing” me and they did. I was also focusing on surviving and beating my cancer. All other aspects of recovery were largely unaddressed. I have a strong faith in God, so prayer and meditation helped greatly. Hoping not to need it in the near future, but I am prepared to utilize it next time.

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@alive, Oh, I'm so glad that you found out about Palliative Care. You've had a pretty rough road and I love your sign-in name that celebrates it. Palliative care works very well if and when you need it, but sometimes you have to ask for it. And it also depends on the person helping you the most whether you get the support you want or need.

I think that in this day we all have to look into ourselves for most of the comfort, as you did turning to your faith. Part of the healing process has us doing this, looking to ourselves for strength that we didn't know we had.

Stay well and use your strength if you ever need it for this again! You've done so well!

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@baeph

This info is so important. We have been offered palliative care. We actually haven’t understood what they do and unfortunately it’s not well defined by the doctors. I will dive deeper to see how we can take better advantage of what they offer for my husband’s recovery from pancreatic cancer. Thank you for this info.

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Hello @baeph Here is some information from Mayo Clinic's website that gives a good description of palliative care.

--Palliative care
https://www.mayoclinic.org/tests-procedures/palliative-care/about/pac-20384637

How is your husband feeling now? What concerns do you have regarding his treatment?

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@baeph

This info is so important. We have been offered palliative care. We actually haven’t understood what they do and unfortunately it’s not well defined by the doctors. I will dive deeper to see how we can take better advantage of what they offer for my husband’s recovery from pancreatic cancer. Thank you for this info.

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@baeph, my understanding of palliative cancer, especially for cancer, can be defined as comfort care or helping to manage the side effects of cancer and its treatments for the patient and their family and supporters. Palliative care concentrates of managing symptoms, like pain, depression, nausea, mobility, etc. - anything that affects quality of life. Palliative care is meant to enhance a person's current care by focusing on quality of life for them and their family.

Current care can include patients for whom their cancer is expected to go into remission or is metastatic and everything in between.

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